Mr PHIP No. 4 Life after treatment for localised prostate cancer

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1 Mr PHIP No. 4 Life after treatment for localised Mr Phip Mr Phip No. 4 / Key points PSA tests are used to monitor cancer control after treatment for. Your PSA drops more quickly after surgery than radiotherapy. In most men, it stays low or undetectable for many years. The period after treatment is a chance to improve your diet, exercise and weight it may help your outcome. If the PSA starts to rise again after surgery, salvage radiotherapy still offers a chance of cure. Introduction For more than 90% of men, life continues uneventfully for many years after their treatment for localised. Normally there is a program of monitoring to ensure the cancer has not returned and we will describe that in this information sheet. The months and years after your treatment for localised prostate cancer are a time when it is important to improve your overall health as this can affect your outcome for prostate cancer. We give you tips on how to do this as well as to avoid unnecessary worry. Can doctors tell me the likelihood of cancer recurring? If your main treatment was radical prostatectomy (surgery to remove the prostate and surrounding tissues), a specialist doctor (a pathologist) will examine the prostate gland and tissue that was removed. The extent and appearance of the cancer cells give more information about the risk of return (or recurrence) of the cancer. Should the cancer be confined to the prostate gland, the outlook is better than if it has spread outside the capsule of the prostate or into the attached seminal vesicles, which are removed with the prostate. The pathologist will see whether the cancer extends to the cut edge of the prostate (the surgical margin). If this is so, it is likely that some cancer cells have been left behind. This is called a positive surgical margin. In this case, your doctor may recommend you have some extra treatment within a few months following your operation, such as external beam radiotherapy. The cancer grade or Gleason score gives an idea of how aggressive the cancer is. How is cancer recurrence detected? The best indicator of recurrence is the prostate specific antigen (PSA) blood test. PSA is a protein produced by normal prostate and cells. It is found in the blood in higher amounts than normal when cancer is present (see Mr PHIP No. 2). It is a very good indicator of whether living cancer cells remain following surgery or radiotherapy. The meaning of the test result differs depending on which treatment you had. Monitoring after surgery Since PSA is produced by both normal and cancer cells in the prostate, if all prostate cells have been removed at

2 the operation, then the level of PSA ought to fall to an undetectable level, or less than 0.1 ng/ml. The time taken for the PSA to drop to this level after surgery depends on how high it was before the operation; in most cases, it should be undetectable at 3 months after surgery. Most surgeons recommend a PSA test every 3 4 months after surgery for the first 2 years and then 4 6 monthly for 2 5 years. After this, the risk of the returning is small. Annual testing is often then recommended. Your doctor may suggest a different testing program. It depends on the nature of your cancer (see Mr PHIP No. 3). What if the PSA starts to rise again after surgery? If the PSA remains detectable or starts to rise after a radical prostatectomy, there must be prostate cells producing it. This is almost always the first sign of a persistent or returning cancer. If the PSA becomes detectable the doctor may repeat the test to confirm the level and may monitor the PSA for many months before recommending a treatment. The treatment decision depends on where the likely site(s) of the cancer recurrence is. One possibility is that the cancer cells remain only in the pelvic region (in the area close to where the prostate was). The tissue removed during surgery, for example, may show that the cancer extends to the cut edge (positive surgical margin), suggesting that some cells may remain in that area. Radiotherapy may be offered immediately after surgery (adjuvant radiotherapy) if the results suggest some cancer remains in the operation site. This may be the case if there is a positive surgical margin, the cancer has spread just outside the prostate (called locally advanced) or the cancer is high grade (Gleason score 8 10). A bone scan, CT scan or MRI investigation can help to determine if the cancer has spread to other parts of the body. However it is not as useful in men with a PSA only just starting to rise. This is because the amount of cancer is still small and these tests cannot locate small amounts of cancer. If cancer is identified in the pelvic area and not elsewhere in the body, radiotherapy can be used to treat it. This is called salvage radiotherapy. It has a mild to moderate chance of curing the cancer. Salvage radiotherapy after surgery is most effective if given when the PSA is still low (less than 0.5 ng/ml) 1. If the PSA continues to rise and the cancer has spread beyond the prostate area, the most common treatment is hormone treatment (removal of male hormone activity), since most cells need male hormone to grow. There is debate about the best time to start hormone treatment. Many urologists suggest starting before the PSA climbs above 15 ng/ml. This decision depends on the rate at which the PSA is rising and how the man feels about the side effects of this treatment (see Mr PHIP No. 5). Monitoring after radiotherapy After radiotherapy (external beam radiotherapy and/or brachytherapy), the PSA ought to drop to low levels and remain low. The time taken for this fall is different from that following surgery, since the prostate gland remains in the body and PSA is produced by both normal and cancer cells. The lowest PSA reading (called the nadir) may not occur for up to 18 months following radiotherapy. Ideally the PSA ought to fall to below 1.0 ng/ ml; at this level, the outlook for cancer control is very good. Up to one-third of men who have had brachytherapy will have a temporary rise in PSA during the first months. After this, the PSA will resume Mr Phip No. 4 / 2

3 Mr Phip No. 4 / 3 falling. This is referred to as PSA bounce. The cause of PSA bounce is not well understood. It can raise concern about cancer growth for patient and doctor, but patience, with continued 3-monthly PSA testing, is usually the best strategy. The frequency of measuring the PSA after radiotherapy is somewhat controversial. Many specialists would recommend once every 3 6 months for the first 2 years, 6 monthly for 2 5 years and annually thereafter. What if the PSA starts to rise again after radiotherapy? If the PSA rises and continues to rise, this normally indicates a return of the cancer. On rare occasions, the rise may be due to growth of benign prostate cells, inflammation or infection within the prostate. Other non-cancer treatments may be appropriate. The way the PSA changes is important. A steady continued increase is likely to prompt the doctor to suggest further treatment to control the cancer (often hormone treatment). Tests to try to identify where the cells are in the body may not be helpful until the PSA is over 20 ng/ml, because the scans do not pick up small groups of cells. Monitoring following curative treatment: No treatment Sometimes a man, with his doctor, may choose not to have extra treatment when the PSA rises. This may be because the cancer does not pose a current threat and/or is slow growing. This is called medical observation and is different from active surveillance or watchful waiting. The doctor may suggest a PSA test every 3 6 months. If the PSA level rises sharply or symptoms of the disease develop that affect quality of life, the doctor may suggest more treatment. The PSA doubling time is often used to gauge how rapidly a cancer is growing and how much of a threat it may be. A PSA doubling time of fewer than 12 months may suggest a need for further treatment (usually hormone treatment). We are not sure yet whether starting hormone treatment early or late changes the overall longer term control of the. Quality of life is also a factor in these additional treatment choices. Looking after your overall health after treatment for localised Some of the most interesting recent research suggests that improving your health in other areas may improve your outcome from. These are: Your diet: a diet high in vegetables, fruit, whole grain cereals and low in saturated fat. Legumes, soy products, tomatoes and fish all contain nutrients that may be beneficial for. Avoid excessive use of vitamin supplements. Some recent trials of multivitamins 2, vitamin C and E 3 have shown they may not reduce risk but in some cases increase it. Exercise: moderate to strenuous exercise both resistance training (improves muscle fitness) and aerobic exercise (improves heart and circulatory health) can provide benefits (and you will feel better too!). If you are overweight, losing some of the excess. Obesity appears to affect the chance of recurrence and predict a poorer outcome. Ask your doctor about your body mass index (BMI) (weight divided by height in metres squared). Aim for a BMI of less than 25. Some of the books in the Resources section have further information about looking after your health in this way.

4 Routine monitoring is normal after treatment of. Aches and pains will occur - but may be just due to growing older! Mr Phip No. 4 / 4 Avoiding unnecessary cancer worries After your treatment (surgical, radiotherapy or observation only) you will still go on having the common aches and pains (such as headaches and back aches) that are a normal part of living and growing older! Men tell us that, after a diagnosis of cancer, they are more likely to think of these normal symptoms as a sign of the cancer returning or spreading, when this is not the case. Sometimes after surgery to remove an organ, something feels different, because your organs internally have a different arrangement with each other. This is not harmful in any way but may be interpreted as due to the cancer. Recovery from surgery or radiotherapy will also involve symptoms that may be new to you but are part of the healing process. Again, you may wonder if these new feelings are a sign of cancer returning. If you are concerned about any of these, you may be worrying unnecessarily! These are sources of worry you can easily do without. Talk to your doctor or specialist when in doubt. Talking to other men who have had your type of treatment may also be helpful. See Resources. Because the PSA level is the best reassurance that the cancer is not growing, it is easy to become very focused on that regular test result, and let it invade one s day to day living. This kind of focus can distract a person from their normal enjoyment in life. It is not necessary once you have established a program of regular monitoring with your doctor. After initial treatment and recovery, there is no reason why you should not return to your normal activities and enjoy an active life. If your concerns about persist and interfere with your quality of life, discuss them with your doctor or specialist and seek further help. Fact sheet 34 on the Beyondblue website discusses anxiety, depression and and gives further resources. The book by John Ashfield in the Resource section is also an excellent resource. Maintaining quality of life for you and your family Taking time, talking with your partner, family and GP and having repeat consultations with your urologist will help you feel confident in the steps you are taking. It is important to keep active doing things that you enjoy. Relaxation and meditation may help you release tension and anxiety and give your body its best chance to recover. Some men feel down after treatment for, but it usually gets better over a few months. If it persists and is troubling, you should discuss it with your GP or specialist or seek further help. Partners of men with prostate cancer also feel anxiety and may need support. Involving partners in consultations and maintaining open communication is very important. Talking to other partners at support group meetings can be helpful. cancer is not contagious and is not known to affect your partner or close contacts. See Resources. If your cancer was diagnosed at an early age (under 65 years), close male members of your family such as a father or a brother may also be at a higher risk from. They may benefit from an early detection program (regular PSA testing) and could discuss this with their doctor. What the future holds Even if the PSA continues to rise after salvage treatment for prostate cancer there is typically a long delay (usually several years) before you feel any symptoms from the disease.

5 Mr Phip No. 4 / 5 Specialists often advise starting hormone treatment well before you develop any symptoms and this can control cancer growth, typically for many years. The slow growing nature of most s works in your favour. For many men, the years of life ahead are meaningful and enriching. Sources 1. Heidenreich A, et al. Guidelines on. The Netherlands: European Association of Urology, Lawson KA, et al. Multivitamin use and risk of in the National Institutes of -AARP Diet and Study. Journal of the National Cancer Institute, 2007;99(10): Klein EA, et al. Vitamin E and the risk of. Journal of the American Medical Association, 2011;306(14): Resources Localised : A guide for men and their families Cancer Council Available from Helpline: , Andrology Australia or org.au Advanced : A guide for men and their families Cancer Council Available from Helpline: , Andrology Australia or org.au There s some good years left yet: The experience of a prostate cancer survivor Barry Oakley. Published by the, Repatriation General Hospital, Daw Park. Phone: Life s in the pink: How to maintain a quality of life by a survivor Barry Oakley. Available for download Promoting wellness for patients 3rd Edition 2010 Mark Moyad Ann Arbor Editions Taking care of yourself and your family: A resource book for good mental health John Ashfield. Peacock Publications Available as an audiobook or download from Coping with a diagnosis of Queensland Cancer Fund. Phone or download More resources See the Mr Phip resource list in this series For more information Mr PHIP series available online at: 1. cancer: Should I be tested? 2. Interpreting the PSA test for prostate cancer 3. After a diagnosis of : Choosing a treatment for localised 4. Life after treatment for localised 5. Hormone treatment for prostate cancer 6. Sexual function after treatment for 7. Useful resources / Glossary Internet Cancer Foundation of Australia Lions Australian Cancer Website Andrology Australia Phone National Cancer Helpline:

6 Disclaimer This information sheet is not intended to take the place of medical advice. Information on prostate disease is constantly being updated. We have made every effort to ensure that information was current at the time of production; however your GP or specialist may provide you with new or different information that is more appropriate to your needs. Copyright Repatriation General Hospital, 2012 About Mr PHIP This information has been developed by the Urology Unit at the Repatriation General Hospital, in consultation with men who live with prostate cancer, their families and friends. In addition other health professionals and community agencies have contributed to their production. We are grateful to all of these individuals and organisations who have been so generous with their time and willingness to assist. Mr Phip No. 4 / 6

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